Hi my name is Andrea. I live in Pennsylvania. I have been married for 22 years and have a grown son. I enjoy gardening, decorating, homesteading recipes. I have a small hobby farm with chickens and goats. I love my country life. I also have a small soap making business that I do for fun. I was diagnosed with Tumid Lupus in 2010. Only really dealing with rashes on my upper arms, back, chest and some joint aches. But that has now changed, I just came out of a really bad flare over last couple weeks. I did a dumb thing and laid in a tanning bed. I have always done this in the past in the Spring. Thinking I need to "build up" a little tan for the summer. Always thought I was doing myself a favor. I have learned a hard and painful lesson. Now knowing and being told by my rheumy that every time I expose myself to UVA/UVB light I am taking a chance and just accelerating my lupus. He is unsure how sun sensitive I will be now. He is suspecting extreme and recommending 50spf at all times, hats and protective clothing with the sun and outside. I ended up with chills, fever of 102+ for days, body aches that I had never felt before and a blistering rash from head to toe. Now been on 60mg of prednisone for almost 2 weeks and started back on 400mg of plaquenil. I am just starting to feel better and the fatigue is finally going away. I am now taking my disease very seriously. Never knowing I could get so sick. It sent all my bloodwork into chaos. Decided to join this group, it's always good to find kindred spirits to share stories, encouraging words and understanding ;)

Nonna

04-18-2014, 10:17 AM

Welcome Andrea,
The hardest thing any of us comes across is having to make changes in out lifestyle. My most favorite thing was going to my granddaughters softball tournament, spending the day at the ballpark always made me feel great. Once I started the meds though I had to give that up.
Good luck and welcome to our family

Saysusie

04-19-2014, 08:43 AM

Hello and Welcome to our family Andrea14. I am so sorry that this had to be such a painful lesson for you. However, it is one that we are all familiar with and many of us have suffered in the same way. Your doctor is absolutely right in telling you to wear sunscreen ALL of the time. I always recommend nothing lower thand 50SPF and to make sure that it protects you from UVA and UVB.
Of note, also be very careful around fluorescent lighting (Such as is found in Department Stores, Offices, etc.) as it can have the same affect as sun exposure for us. Lightweight protective clothing and a good sunscreen should be enough to protect you if you have to be in places that have fluorescent lighting. Also, sunglasses and a hat are a good addition to your daily routine (even in the winter months!).
I am so happy that you decided to join our family and I know that you will find that this site is filled with wonderfully understanding, compassionate, and informative people. Again...welcome!